For many, a diagnosis of sarcoidosis leaves more questions than answers. Some of these questions need to be answered by a medical professional, which is why we host Q&A sessions with our experts physician panels at FSR Patient Conferences. However, there are questions that doctors can’t answer, about experiences they can’t fully understand. These questions have answers that you can only know if you’ve been personally affected by sarcoidosis. We wanted to answer some of those questions for you, so we rallied our team of 73 awesome FSR Patient Ambassadors to help us out.

A while back we reached out for questions, and you answered! We received over 200 questions from people asking about a variety of related to life with sarcoidosis. All of the questions were reviewed and the most commonly asked ones were shared with our ambassadors to weigh in on based on their own experiences.

Since there were such a wide variety of questions, we categorized them into three overarching topics: hard conversations with friends and family, developing a healthy lifestyle, and how to navigate medical expenses. We’ll be tackling each of these three topics in a blog post and sharing them over the course of the next few months, so be sure to check back for more answered questions!

 

Understanding Our Healthcare System

 

Dealing with sarcoidosis means lots of trips to a lot of different doctors and with that comes medical expenses. Figuring out how to pay those bills, or applying for disability can seem impossible given how complicated the process is. Our patient ambassadors know how frustrating it can be and want you to know you’re not alone. Here are some tips from them on how to navigate our complex healthcare system and if you do need more direct help, reach out to your local ambassador.

 

Any suggestions for someone who’s struggling with medical expenses? 

“Ask about setting up small payment plan and financial assistance programs because they are out there! Just ask! Please ask because this is one less thing to be anxious or worried about. There are also programs to assist with help paying medication costs.”

What are the first steps of applying for disability?

“As soon as you’re diagnosed with any kind of disability, call Social Security and/or apply on time. It’s up to your doctor to make the paperwork stick so that it’s approved the first time.”

 

First I would reach out your local social security office so they can send you an application packet. A lot of people will say you need a lawyer that will charge you thousands of dollars to take your case, but I don’t believe that to be true.

The key to getting disability approve is to keep all of your paperwork and notes from your doctors. The more paperwork you have the better. If you are a sarcoidosis patient, your paperwork will probably be as thick as a book. I know that everybody’s case may not be the same, but I never had to go to any hearings. It only took me three months to be approve. So I hope this is encouraging.”

 

“Get a definitive diagnosis of Sarcoidosis from a doctor. I was misdiagnosed with exercise-induced asthma for over 2 years and the misdiagnoses of lesser conditions may pile up in your medical records and may distract from the definitive diagnosis that explains all of the different symptoms in the sarcoidosis spectrum.”

What do I do if my disability claim gets denied? What are my next options?

“Appeal as many times as necessary until your approved, even if you’re not 100% approved.”

 

“Get an attorney and appeal. Disability claims are often denied because of absent or poor quality medical records which your lawyer can help you improve. Bottom line: the report should not just say you have sarcoidosis. It should also describe ‘with medical certainty,’ how sarcoidosis affects you in everyday life and prevents you from working.”

 

“First off, know that they deny most claims the first time around, so try not to take it personal. Next, know that there are MANY levels of appeals, and unfortunately none of them are quick.

One of the most important things you’ll need to do is decide whether you want to get legal representation or manage the case on your own. Personally, I had a bad experience with my rep when I applied, so then I handled my appeal on my own. You’ll have to do a LOT of follow-up with SSA, and your doctors, labs, treatment providers, etc. and make sure you obtain a lot of documentation.”

 

“If you get denied, determine what were the factors for the denial. The key to success is the statement from your doctor and concrete measurable test results which represent your disease for comparison to the documented ‘range’ for disability. For me, once I provided a current PFT report, my disability was immediately approved. I did not experience an extended delay of any sort with my claim.”

If, after reading through our patient ambassadors responses you still have questions, feel free to submit them at our Ask the Ambassador page and if you would like to answer similar questions about your own experience, click here!

 

We would like to thank our patient ambassadors for all of their hard work, and specifically thank Robin Thomas, Heidi Junk, Robert Gross, Kerry Wong, Jessica Reid, Lisa McHale, Jackie Ploudre, Deborah Rice, Jeanne Fershleiser, Cathleen Terrano and Sharon Stewart for sharing their advice!